Assisting Children With Down Syndrome

It is estimated that up to seven million persons worldwide are affected with the Down Syndrome.

Down Syndrome is a natural chromosomal arrangement that has always been a part of the human conditions, as it cuts across racial, gender or socio-economic lines, while affecting approximately one in 800 live births.

Down Syndrome is a condition in which an extra genetic material causes delays in the way a child develops, both mentally and physically.

It is a congenital disorder in which a person is born with three sets of chromosome 21 and it is characterised by mild to severe mental impairment and weak muscle tone, among others.

Global consciousness on the Down Syndrome started about seven years ago when the inaugural World Down Syndrome Day (WDSD) was celebrated on March 21, 2006 in Singapore.

On March 21, 2012, however, the United Nations (UN) officially declared it a global event.

The theme of this year’s celebration of WDSD is “I want to work’’.

Speaking on the event, UN Secretary-General Ban Ki-moon condemned the perceptible discrimination against persons with Down Syndrome across the globe.

Ban stressed that these persons were entitled to the full enjoyment of all human rights and fundamental freedoms.

“In many countries, they continue to face stigma and discrimination as well as legal, attitudinal and environmental barriers that hinder their participation in their communities,’’ he said.

The UN scribe noted that the discrimination could be as invidious as forced sterilisation and as subtle as segregation and isolation through both physical and social barriers.

Ban expatiated that prejudice against children with Down Syndrome had obstructed their education, as this had compelled some parents of the children with intellectual disabilities to put their children in special schools or keep them at home.

“Yet, research shows  that more people are coming to understand  that diversity in the classroom leads to learning and understanding that benefit all children,’’ he stressed.

He pointed out that for decades the UN had been striving to promote the wellbeing and human rights of all people, adding that those efforts were strengthened via the adoption of the Convention on the Rights of Persons with Disabilities

Mrs Ify Nwosu, the Coordinator of Down Syndrome Support Initiative, a non-governmental organisation, stressed that the notion that people with Down Syndrome were imbeciles was false because it had no medical justification.

She noted that uneducated persons often confused people with the Down Syndrome condition with imbeciles, saying that they simply judged them by their looks.

Nwosu also noted that due to the fact that there was no cure for the Down Syndrome condition, many parents often decide to terminate such pregnancies at the early stage.

“Down Syndrome is not preventable as long as you are still in your reproductive age.

“It’s a chance you take in life, it is an error of cell division and the mother does not know how the child will look until the child is born, unless she goes for a check,’’ she said.

However, Dr Ireti Babaniyi, a paediatrician, called on government at all levels to provide support for people with Down Syndrome in the country.

She also urged the government to provide the enabling environment for children living with the condition to interact with other members of the society even if their parents were reluctant in that regard.

She added that due to their condition, some of the children with Down Syndrome were always locked up at home by their parents.

The paediatrician, nonetheless, advised people not to take undue advantage of the condition of persons with Down Syndrome, adding that such persons were loving and trustworthy.

Babaniyi, however, bemoaned a situation in which persons with Down syndrome were not taken into account while formulating government policy.

She particularly solicited the establishment of special care units for people with Down Syndrome, just like what was obtainable in advanced countries.

The consultant also urged the Federal Government to include persons with Down syndrome in the treatment schedule of the National Health Insurance Scheme (NHIS).

Medical experts, however, warn that the age of a mother might increase the chances of having babies suffering from the Down Syndrome.

Dr Fred Achem, a physician, said that women within the age bracket of 35 years and above had a greater risk of giving birth to children with Down Syndrome.

He said that the condition had a combination of mental and physical symptoms due to the presence of an extra copy of chromosome 21, which affected the normal development of the body and brain.

“Down Syndrome cannot be cured but early intervention will enable persons with the condition to live productive lives well into adulthood, ’’ he said.

Besides, Achem said that some defects which could lead to some of these deformities could be detected in pregnancy.

“They are what we call congenital abnormalities and they are detectable during pregnancy.

“These are areas where we do genetic counselling, so that mothers who have abnormal babies are advised on how best to avoid a repetition in their next pregnancy,’’ he added.

Achem said that the new trends in medical practice had given doctors the opportunity to look at a baby to ascertain if it was at risk of one kind of disease or the other in infancy.

Mrs Rose Mordi, the National President, Down Syndrome Foundation of Nigeria (DSFN), called for the social integration of children with Down Syndrome, so as to make them feel as normal as their peers.

She noted that it was also important for their peers to see them engage in normal things, just like them, in order to reduce the stigma associated with the condition.

Mordi stressed that owing to their disabilities, children with Down Syndrome could only attend special schools, reiterating the need to allow such children to partake in activities that would foster their pragmatic integration into the society.

According to her, the three major aspects of caring for people living with Down Syndrome are early medical intervention, early educational intervention and vocational training as well as early social integration.

She underscored the need to encourage children with Down Syndrome to live normal lives, adding that such efforts would go a long way in changing the general public perception of persons living with the condition.

Mordi said that even though her Foundation wanted to do more for children with Down Syndrome, paucity of funds had been a limiting factor, as it was quite expensive to provide care for such children.

She said that even where government had been very supportive, more still needed to be done in efforts to adequately cater for the physical, educational, emotional and medical needs of children with Down Syndrome.

Mordi, who claimed that her Foundation was caring for not less than 60 children with Down Syndrome, stressed that it cost a minimum of N500,000 to take care of a child living with the syndrome annually.

She stressed that due to their peculiarities, the children were predisposed to ailments such as eye problems, speech defects, respiratory tract infections and thyroid malfunction.

Mordi added that such children needed to undergo regular medical check-ups which cost a lot, while a lot of efforts were required to give them education.

She, nonetheless, urged the government to collaborate with agencies such as her Foundation in efforts to enhance the wellbeing of children with Down Syndrome and promote their integration into the society.

Ofili writes for News Agency of Nigeria (NAN)

Franca Ofili